Saturday, March 19, 2011

Sweet Dreams, Frightening Moments

First things first. I hope I did not accidentally misrepresent myself in the last blog entry; Kristin and I are absolutely thrilled that people all over the country (and even world!) are thinking good thoughts for us and praying for us. As I said yesterday, it is both humbling and appreciated.

Second things second. Someone asked if the 50/50 odds were in reference to survival or intubation. Emphatically referring to intubation! Hope my sleepy grammar didn't cause too much confusion. Also hope my students don't bash me for unclear pronoun references.

Now onto the day's events...

Kristin continues to be amazing with little Sam. Her favorite activity is to let him hold her fingertip while she supplies binky entertainment. Those are the moments when he seems most alert. Good moments.

Nothing particularly important going on here, but I think he looks like a burrito. Mmm...burrito. Dinner at Chipotle tonight compliments of the Drowns, their generous (and anonymous) friends, and my friends and colleagues at CTHS. Thanks for the gift card(s)!

As promised, a better picture of Sam in his new lion hat. He didn't wear it long for reasons that will become clear later, but I wanted to show it anyway. Also, it's getting harder and harder to catch him with his eyes open. As of this precise moment, Monday's surgery is 32 hours and 21 minutes away. Kristin and I both agreed that when we first came here, we were most worried about the surgery itself; now, because of Sam's scary complications, we think it can't get here soon enough. Again, details below...

This was my favorite and worst moment of the day. Favorite for obvious reasons. Worst because of the second picture. Evidently, Wolfie is both literate and not without a sense of humor. He must have read yesterday's Shakespeare-inspired post, because today he lived in a world of high drama. The observant may notice that Samuel is beginning to get a bit jaundiced. We are hoping it is not a result of infection, but the possibility lurks. Also, seconds after this picture was taken, Sam had the first of today's numerous apneic episodes. He became almost completely inert and unresponsive; his heart rate dropped below 40 bpm; his respiratory rate dropped to less than 10 breaths per minute. Seconds later he was revived with an oxygen mask, but as I suggested, this was not the last of his episodes. They continued and even worsened throughout the day...

Which brings us to luggage. Yes, luggage. Those of you who know me will not be shocked, but evidently, in the face of powerlessness and uncertainty, I try to control something. Today's great accomplishment? I reorganized the clothes in our suitcases. Felt good.

Then I solved a Rubik's Cube. Felt even better.

In spite of my moments in time-well-spent-land, however, Wolfie continued to worsen throughout the morning and early afternoon. He was having episodes 10+ times per hour with one requiring significant intervention to get him breathing again. It became so bad that the attending physician herself appeared and gave him a stern talking to. She even used his middle name, Jerry, so you know he was in big trou-ble...

As a result of Samuel's worsening attacks, the doctors decided that it was time Wolfie got a new hat. What is it, you ask? A rhino? A unicorn? Triceratops? Personally I'm thinking white ninja. Then again, it might just be the CPAP mask, the final intervention before the dreaded uncertainty of intubation. The Catch-22? Most of Sam's other data looks pretty good, but allowing the apnea to continue at this frequency and severity is becoming...unsafe. Intubation would virtually guarantee that the apnea would stop; however, the critical and delicate balance of his other issues (specifically his oxygen saturation levels) would likely be interrupted. Hopefully the CPAP will do the trick. We'll know one way or another tomorrow.


  1. Let us know if you need to have some of the rest of us tag in to tickle feet, poke, or otherwise generally bother the sweet prince in order to keep him on the lighter side of sleep... :)

  2. Will be hoping that today is less eventful for you. I'd be happy to bring by Chipotle anytime so feel free to ask. :)

  3. Dad's en route. I'm happy to know how to post to your blog now.

  4. Dear Sam,

    We like your mask. Rhinos, unicorns, and triceratops are all very cool. Personally, I prefer anything with a tail. If you would like a scarf to tuck in your diaper, I will be happy to share. I can also teach you how to gallop.

    Good luck in your surgery. You are very brave!

    Love, Payton Syers (and my two brothers Brady and Landon)

  5. Sam,

    It looks like even with the new "hat" you're resting comfortably (and hopefully more safely), and I might add you still manage to look super cute!

    Jason & Kristin - I'm glad the gift cards worked out...a burrito can always make things better. Isn't that right, Jason? :)

    I wanted to stop by today. However, I can't seem to shake this cold, so I'm going to continue to keep my germs to myself. I'll check in later in the week to see if you're ready for visitors again.

    I'm thinking about all three of you a lot. I know tomorrow is a big day full of lots of things to be anxious about, but it sounds like the nurses and doctors know exactly what Sam needs. Know that there are lots of people holding your hands in the virtual waiting room you've created.

  6. Dear Samuel, There are so many people sending positive thoughts and prayers your way as the doctors and nurses prepare you for surgery. I was a bit overwhelmed when I visited you yesterday with all of the machines and activities and sounds in the ICU. But when I actually got to see you in person, I was "verklempt" (as your dad noted) at how beautiful and perfect you looked, even if you didn't have your "Wolfie" hat on and were having a bit of a hard day. You are one tough guy! I think that's because you have two tough parents! Hang in their sweet boy.

  7. Take care of yourselves, Jason and Kristin. Eating and sleeping make everything easier. You have a beautiful child. Our thoughts are with you.
    Julian and Renee Jones

  8. joanne writing to you from savannah, georgia (family trip)March 20, 2011 at 1:36 PM

    jason, your entries are wonderful-- thank you for taking the time to update everyone. i'll be on pins and needles until after the surgery is successfully completed. ps: did you really solve that rubik's cube or did you google that image? let's get serious here.

  9. I'll be thinking of and praying for you all tomorrow!

  10. 1 Samuel 1:20b: She named him Samuel, saying "Because I asked the Lord for him"

    Praying that the Lord works His miracles through the hands of the surgeons tomorrow.

  11. Continually praying for your sweet boy.